Air Hunger When Laying on Left Side

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katygal

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My PALS is on Trilogy for about 12 hours at night and another 4 during the day. On two occasions, he has had difficulty breathing on his left side at night while on the machine. The first time it took about 30 minutes of sitting up to recover but last night it was longer. Our RT recommended using the higher secondary setting if this occurred but my PALS didn't think about switching the setting last night. As of a year ago, a fluoroscopy did show slight elevation of the left diaphragm so we know the left side was showing some atelectasis. Based on other's experiences, is this consistent with possibly needing changes to the Trilogy settings? We have Clinic this week so I will be able to visit with the pulmonologist at that time but was just wondering if anyone had dealt with this before.
Thanks...as always.
 

lgelb

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I would first try the secondary setting when on his L side to see if it still helps but if he shifts between sides in sleep, it is more the volume support that should come into play, not a higher setting -- in other words, if the pressure ranges are set optimally and the volume target is realistic for the weaker side, then the machine should adjust to whichever side he's on.

Let me know if you need more help.

Best,
Laurie
 

katygal

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Laurie,
Thank you for your input. My PALS experienced the same thing early this morning and once again, it is taking a while to get back to his "normal" breathing. He did use the higher setting last night so it didn't seem to correct the problem. I did notice the leakage rate was higher than 50 at times so we check the hoses and tried several masks. He also used the cough assist to see if that would help open his lungs. We don't see, hear or feel any congestion. I think it is continuing weakening of the diaphragm. I will check with him when he gets up but we will probably call our RT this morning and see if they would like to come out to adjust the settings. The service we use is associated with the ALS Clinic and they have lots of PALS that are patients. (One of the great things about living in Houston). I also think I will take your suggestion for earlier threads to do more reading on the Trilogy settings so I know how the different settings work.
Thanks again!
 

Narrowminded

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Katy, my husband wasn’t able to lay on either side. He described it like his lung collapsing together. He was only comfortable breathing on his back. Not ideal for skin issues, but it worked for him for more than 8 years. I’m hoping some setting to the trilogy will help, but if not, you might want to try having him on his back. Brian was able to tolerate a pillow under his side, to it did allow a tiny shift. Hope you can figure something out.
 

katygal

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Sue,
As much as he hates it, I think he will have to learn to sleep on his back. Undoubtedly, last night's difficulty came while he was on his right side. I mentioned your husband's description, and he concurred with that feeling. So, tonight he will not go to either side. He currently is using several firm pillows to prop himself up but I also mentioned sleeping in the recliner if that would feel better. Maybe this situation will push him to agree to purchasing a comfortable lift chair and possibly an adjustable bed.
 

lgelb

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He definitely needs a hospital bed, not just for breathing and comfort, but for future transfer needs. Medicare will pay toward the bed. And that will make sleeping on his back more feasible.
 

katygal

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We will be enrolled in Medicare Part B beginning March 1st so I hope to get scripts (or whatever we need) for some DME at Clinic this Friday. He didn't have any issues last night but he did stay on his back so he didn't sleep as well. I am sure it will take time to adjust. Sadly, we found out yesterday that our ALS pulmonologist, Dr. Venessa Holland has passed away. We loved Dr. Holland and she loved her ALS patients. She will be missed greatly by everyone.
Thanks again for all the shared thoughts and suggestions.
 

Nikki J

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I am so very sorry for your loss. It is hard to lose a trusted and loved doctor. May she rest in peace
 

Narrowminded

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I’m glad i could be of some help. So sorry for your loss.

Hugs
 

katygal

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Just a quick update...I visited with an RT at the company who provides our Trilogy. He had me increase the EPAP and suggested going back to the primary setting (with the lower volume). My PALS didn't have any problems with his breathing last night and also found that just a slight lean to his side helps him go to sleep...something a pillow will help with. And now I know all his Trilogy settings! Thanks all!
 

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that is such great news Katygal!
 

Narrowminded

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Awesome Katy, so glad the RT could help along with suggestions here as well.
 
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